The FIND Website Goes Live!

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New website launched for help with rare genetic conditions.
The Cerebra Centre for Neurological Disorders at the University of Birmingham launch has developed a novel online resource to improve the exchange of knowledge about rare genetic conditions and difficulties experienced by people with intellectual disability.

The site focuses on behaviour and its purpose is to summarise research studies using a range of interactive and engaging formats, for example, parent stories, professional talking heads, bite-sized written information and an interactive database.

This has been a huge project that has involved many different groups of people coming together.  Of all the contributors, it is the families of children with intellectual disability who were the most involved.  These families spent a long time developing and contributing firsthand video accounts to share on the site.

Another exciting area on the website is the key topics area that gives background information around a wide range of behavioural difficulties including repetitive behaviour, sleep, challenging behaviour, health difficulties and many other areas.

All content on the site is going through a rigorous peer review process.  This means that the content is checked by experts in the field who do not work as part of the Cerebra team.  This is gold standard procedure for ensuring that the content can be trusted and that it reflects an accurate picture of current research.

Finally, the site is being expanded and will shortly contain a wide range of resources that can be shared with professionals, including specific tools for the assessment of challenging behaviour and behavioural characteristics in people with neurodevelopmental disorders.

The Cerebra team hope that this website will reduce the time it can take research findings to impact on clinical practice. It is estimated that, on average, this can take around 10 years; however, with the new resource it should be much quicker. Furthermore, by having approachable user friendly resources it is hoped that parents and Team mainprofessionals will no longer become bogged down in technical language that hinders the exchange of information.  This strategy seems to be working as the website has already had a high number of visitors from across the world.

Members of the Cerebra Centre team are keen to hear back from families about their experiences of using this resource so they can develop it further.  If families are interested in getting involved by contributing information or family stories please email [email protected]

This project is funded by the charity ‘Cerebra’ and the Economic and Social Research Council (ESRC) .